Making "e-Patient Connections"

By Robert Breining

October 4, 2011

This past week I spent three days in Center City Philadelphia, where I attended the e-Patient Connections 2011 Conference. When I was asked by TheBody.com and HealthCentral to attend this conference as an e-Patient and blogger I just had to say yes. This conference was bringing attention to important issues that all patients deal with despite the disease that they are living with. Like I said, I had no choice but to say yes.

I honestly didn't know what to expect when I walked into the conference. This conference was different then any of the past ones I have attended and blogged about. You see this conference wasn't HIV/AIDS specific. So it was a whole new ball game. I arrived at the Hyatt at the Bellevue in Center City Philadelphia on Monday September 19th around 11am. Since I only physically met one other person who was attending this conference, I was a bit nervous to say the least. I even had thoughts of people pointing and laughing about the guy with HIV/AIDS. I know it is crazy for me to even think like that but, even when you are confident with your own status the stigma that surrounds this disease can wake the tiger every once in awhile. So once I entered the conference room I was greeted by Olivia Ford of TheBody.com and the hilarious Mark S. King. I immediately felt a sense of calmness over come my body.

Photo Credit: Klick Pharma.

Once I sat down and we got started I knew that this conference was going to change my life in some profound way. I was going to be more than a guy who blogs and had HIV. I was going to be a part of an amazing group of individuals who where brought together by Klick Pharma, HealthCentral to discuss and come up with The Digital Patients Bill of Rights. We all started by introducing ourselves and then we were asked "How would your friends describe you?" They selected about 20 of us to come together and bounce ideas around. While we shared about ourselves and our passions there was a individual from Image Think who was literally drawing what were were sharing. It was an amazing thing to watch. After a few hours of discussion I found myself among other individuals (e-Patients) like myself but living with a different disease.

Photo Credit: Klick Pharma.

Robert and Mark cartoon.

We all came up with and agreed on that the following goals must be met.

Shared access to our data

Attitude of collaboration and overall respect

The patient is the largest stakeholder

Transparency and authenticity across all areas

Voice of the patient is a legitimate source

The right to efficient communication with providers who utilize the technology we need

We (e-patients) sat in the front row at a round table during the conference. Seriously we had the best seats in the house. There were a few speakers and a few presentations that really stuck out in my mind when I think about it.

There was one women named Charity Sunshine Tilleman-Dick who caught my attention the moment she walked on stage. She had this glow to about her. She was a like a magnet, I couldn't take my eyes off her. She then opened her mouth and started to sing. We heard the most beautiful sound come from her lips. She sounded like how I imagine the angels sound when they sing in heaven. She made the hair on the back of my neck stand up. She gave me goose bumps. Once Charity stopped singing she sat down and shared her story. Her story was just as powerful as her voice. You can hear her story in this video.

Another really cool thing that was shown at the conference was the VGo robot. VGo is an all-in-one robotic telepresence solution that includes everything you need to establish your physical presence in a distant location. VGo is uniquely integrated with a camera, microphones, and video display -- all on a light-weight, motorized, stylish, remote-controlled platform. It was really cool to see the guy move around the conference floor and hold conversations with us.

I loved that this conference was about using new technology as a provider and a patient. The conference was streamed live via Ustream, they had big TV screens showing real-time tweets from attendees. So the speakers would have instant feedback. It also allowed the attendees to see what others thought on topics throughout the presentations. During some of the breaks I was asked to be a part of a Social Media Coaching Corner answering questions about using Twitter, Facebook and other popular social media. Like I said, this was right up my alley.Overall I learned a lot from this conference and met so many incredible people who are overcoming huge obstacles every day.

While at dinner on Tuesday night, Mark S. King decided to take a fun photo of me in the bathroom since the tiles were black and white and matched my pants. I had to include this in my blog because it was so hilarious.

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I describe myself as a "positive person with purpose." My goal is to help people living with HIV/AIDS discover similarities in each other ... and form friendships. I want to ease the shock of a diagnosis and remind people that our dreams are not infected. I am also an HIV/AIDS cyber-activist, radio show host, blogger and social network guru.

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